From the Top

CHICAGO WAS A BLAST! I want to thank everyone who made it a success! The support from our sponsors, conference committee, staff and volunteers was tremendous! If you missed it, information is available on our website, www.pemphigus.org, or you can email Noelle Madsen at noelle@pemphigus.org and she will help you find what you’re looking for.

This issue is a good one (and a few pages thicker than usual). IPPF Founder Janet Segall was in Chicago for the Patient Conference and provides us with a summary of the weekend’s events (p. 4). This event was extra special because we celebrated the IPPF’s 20th Anniversary (p. 5). Congressman Danny Davis (Illinois 7th District) stopped by and said some wonderful things about the Foundation. Dr. Grant Anhalt presented Janet with a commemorative 20th Anniversary plate. And then Janet presented Rebecca Oling with the Founder’s Award. Rebecca has been amazing over the years and 2013 was no exception! Congratulations Rebecca!
People donate to the IPPF for a variety of reasons. On page 9, IPPF Treasurer Bill Gerstner shares his reasons for donating time and money to our cause.
Do you remember the scared feeling of your diagnosis? How about the relief after talking to Janet, Marc, Noelle, or any of our Peer Health Coaches? Diana’s story is all too familiar, but a call to the office and attending the Patient Conference in Chicago have her singing a new tune (p. 9).
Advocacy, Awareness, and Education are cornerstones of the IPPF. We talk with members and staff in the House and Senate advocating for favorable rare disease legislation. We increase awareness one person at a time, or auditoriums filled with medical or dental students. Find out how you can make a difference on pages 6 and 17. Dr. Terry Wolinsky McDonald tells us more about chronic illnesses (p. 7), while Dr. Mirella Bucci looks at the latest in P/P research (p. 8).
The IPPF has improved the lives of thousands of people since 1994. Programs like our Awareness Campaign and our Patient Education Series help medical professionals, patients, and caregivers. Thanks to donors, family members, friends, and of course, our sponsors and partners, the IPPF will be here for at least 20 more!
I’m glad that you’re a part of this effort. We’re in this together!

Will joined the IPPF in 2004 as the Director of Communications. Since then, he has helped the foundation grow from a one-person, desktop organization to a team of staff and volunteers working at the home office, or their home offices. He enjoys watching movies with family, cheering for Chicago's sports teams, and helping the rare disease community improve their quality of life. Will lives in Sacramento with his wife and children.

About IPPF

The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.Read more »